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Activity Report 2013 Headquarters: C/ Muntaner, 383 2º Activity Report 2013 Headquarters: C/ Muntaner, 383 2º. 08021 Barcelona Tel. 93 414 55 66 [email protected] Regarding any matter related to this report you can contact the communication department by e-mail at [email protected] The report can also be downmoaded from: www.fcarreras.org Publisher: Josep Carreras Leukemia Foundation. Production: www.blueprocess.es Design: Inès Bacardit Layout and typesetting: Laia Freixes Photography: Photographic archives of the Josep Carreras Leukemia Foundation. English version: duual.com Printing: Marbet Servicios Creativos This report is printed on 50% recycled paper with FSC certification produced from sustainable woods of controlled origin. 2 Contents Corporate information 6 Our history 7 Governing bodies 8 Our team 11 Organizational culture and philosophy 12 International presence 13 Financial information 14 The Foundation’s activities 16 Scientific research 18 REDMO 22 Teaching activities 24 Attention to the patient 25 The support of society 26 Communication and e-marketing 27 Our members 29 Occasional donors 30 Benefit events 31 Legacies 33 Supporting companies 34 3 Je me prenais à te maudire, à te détester, à me dire: pourquoi faut-il que le destin l’ait mise là sur mon chemin?* “La fleur que tu m’avais jetée”, Carmen, Georges Bizet *And I found myself cursing you, hating you, and saying to myself: Why did destiny want you to cross my path? 4 Dear friends, Leukemia crossed my path twenty six years ago. At that time I was at the peak of my career and it was a very difficult blow to accept. With the help of my family and friends, and that of an excellent medical team, I managed to overcome the disease. But leukemia had turned my life around by 360º. Out of gratitude to society and the medical community I decided to embark on a new course of life: the creation of an international foundation aimed exclusively at fighting leukemia. With the help of leading scientists, professionals in other fields and from the world of business, the Josep Carreras Foundation came into being in 1988. During this year 2013 we have been celebrating our 25th anniversary. It is a great satisfaction for me to be able to share the advances that have been made during this time with you. We have made it possible to perform around 6,000 hematopoietic precursor transplants (bone marrow, peripheral blood and umbilical cord blood), we have invested more than €110 million in research and we have given assistance to more than 24,000 families. Even so, today, one in four children and half the adult patients do not succeed in overcoming the disease. We are aware that there is still a long way to go and that is why we carry on working every day to achieve our aim: improve the quality of life of people suffering from leukemia and make the disease, one day, 100% curable. We were very keen to celebrate this 25th anniversary in a different way and to share it with the rest of society because, without the support of our partners and friends our road would be much more difficult. So we filmed a documentary called La Fleur in which we wanted to express the countless moving and unforgettable moments we have lived through over the last 25 years. Leukemia changed my life for ever, just as happened to Don José, who sings the aria La fleur que tu me avais jetéein Bizet’s opera Carmen. This is the image we have used for this documentary, it is a metaphor for the whims of destiny, for challenges, but also for hope and opportunity. Without your help we would never have been able to celebrate 25 years of struggle and progress in the fight against leukemia. Thank you for your heartfelt support. With my kindest regards, Josep Carreras President of the Josep Carreras Foundation 5 Corporate INformatioN 6 25th anniversary of the Josep Carreras Leukemia Foundation. Corporate INformatioN A historic moment for the Founda- tion: the laying of the foundation stone for the new building of the Josep Carreras Leukemia Research Institute on the ICO/Germans Trias i OUR Pujol campus in Badalona. The number of families to have been accommodated in the HISTORY Foundation’s reception apartments reaches 100. It was July 1987. Josep Carreras was in Paris re- cording for a film version ofLa Bohème by Giacomo Puccini, directed by Luigi Comencini, when he be- The Foundation celebrates the figure of 10 million bone marrow gan to feel unwell and went to hospital. Forty-eight donors throughout the world in hours latter the blow came: it was leukemia. It was a an event at the Hospital Clínic in terrible diagnosis which, furthermore, came at a mo- Barcelona. ment when both from the profesional and personal points of view his life was in its apogee. Together with a great team of scientists and business The Foundation brings the number people and with the support of his family, in 1988 he of reception apartments in Barcelo- na to five. created the Josep Carreras International Foundation to contribute to finding a definitive cure for leukemia. “I began this project out of pure gratitude. When I The Foundation’s REDMO program became ill, society threw itself in behind me. I want- reaches 1,000 compatible donors ed to return these demonstrations of affection both located for patients awaiting a to the public at large and to science.” transplant. Concert to mark the Foundation’s 10th anniversary at the Fountains of Montjuïc in Barcelona before an audience of 60,000 people. Creation of the Josep Carreras Foundation in Germany and the first Josep Carreras Benefit Gala for the Foundation on the German TV sta- tion ARD First extraction of bone marrow from a Spanish donor for a patient abroad (Australia). 2012 Creation of the registry of bone- marrow donors (REDMO). Creation of the Josep Carreras Foun- dation in the USA and Switzerland. 1998 Creation of the Josep Carreras In- ternational Leukemia Foundation. CORPORATE INFORMATION GOVERNING BODIES EXECUTIVE BOARD The Board of Trustees is the controlling body of the Foundation and its purpose is the fulfilment of the foundational aims as well as to ensure the good management of the Foundation’s assets. President Vice president Treasurer Mr. Josep Carreras Prof. Evarist Feliu Mr. Albert Carreras Trustees Dr. C. Dean Buckner Mr. Ramiro Giménez* Mr. Lluís Bassat Mr. Marcel Pascual* Mr. Arcadi Calzada Dr. Rainer Storb Mr. Albert Carreras Pérez* Mr. Joaquim Folch-Rusiñol Dr. Joan Uriach Dr. Álvaro Urbano Dr. Jordi Sierra* (*) Members of the Delegate Committee 8 INTERNatioNAL SCIENTIFIC COMMITTEE The committee’s function is to supervise the implementation and quality of scientific work, promote research and collaboration, advise the Foundation on the strategies to be adopted and evaluate the projects that are carried out. President Prof. Ciril Rozman Farreras Valentí School of Hematology, Hospital Clínic i Provincial, Barcelona Members Dr. C. Dean Buckner Seattle, USA Prof. Dieter Hoelzer Frankfurt, Germany Prof. Hans-Jochem Kolb Munich, Germany Trustees Dr. C. Dean Buckner Prof. Álvaro Urbano Mr. Ramiro Giménez* Director ICMHO, Hospital Clínic Mr. Lluís Bassat i Provincial, Barcelona Mr. Marcel Pascual* Mr. Arcadi Calzada Dr. Robert Sackstein Dr. Rainer Storb Harvard Institute of Medicine, Boston, USA Mr. Albert Carreras Pérez* Mr. Joaquim Folch-Rusiñol Dr. Rainer Storb Dr. Joan Uriach Fred Hutchinson Cancer Research Center, Seattle, Dr. Álvaro Urbano USA Dr. Jordi Sierra* Dr. Eliane Gluckman Dept of Haematology, Hôpital de Saint-Louis. Paris, France Dr. Jeffrey Molldrem MD University of Texas, MD Anderson Cancer Center Houston, USA Prof. Dr. Catherine Nissen-Druey Basel, Switzerland 9 Dear friends, All of us who form part of the Foundation’s team look back with quiet satisfaction at how we have grown, both as a team and as a Foundation, over the last 25 years. But this satisfaction is tinged with regret when we remember those with whom we shared so much, but who are no longer with us. Please allow me, on the occasion of this anniversary, to remember here three people who have departed but who, each in their own way, have had a very important role in shaping the way the Foundation has evolved and how it is today. Professor Ricardo Castillo was the first of our losses. He was a highly esteemed man in both clinical and academic circles who put his wisdom and kindness at the service of our cause. The regard with which he was held by so many of his medical colleagues was a personal asset which Ricardo brought to the Foundation as a gift. He did not need a computer, e-mail or any other kind of digital device. With his rigour, his meticulous handwriting, his stacks of folders and his kindly conversation he opened doors and convinced people. Forgive me for my very personal mention of him as the person who first inspired me to join the Foundation. I have very warm memories of him. Professor Edward Donall Thomas, together with his wife Dottie, generously accompanied Mr. Josep Carreras from the moment the Foundation was created. Alongside it he created a sister foundation in Seattle and, well into his eighties, he travelled indomitably to Barcelona every year to participate in our Board meetings, and to inspire and evaluate our programmes and projects. Not only was he a Nobel Laureate in 1990 for developing bone marrow transplants, the head of the medical team that attended to our Foundation’s president and a teacher to all the hematologists in the world, he was also remarkable and even more admirable for his modesty and easy manner. It’s true that we have our doubts about the size of the salmon he claimed to have fished in Alaska, but it was always a pleasure to hear him talk, always profoundly, but also full of vitality and good humour and always allowing himself to be guided in almost everything by his inseparable Dottie.
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